Some doctors really are jerks & can be dangerous

[P.Trish]

Hi Dears,

It is venting time.

High BP for last month (lowest 148/75 - highest 178/95) I have been taking 10 grams of Lisinipril 

For over 6 months.

2 weeks, ago my Rheumy ( who is 2 hrs away) told me to keep a BP record (3 X a day for 7 dys). - then , fax him

As a result, he advised to me to see my local primary care dr ASAP. I did. It was 'only' 145/75 in his

office. I brought my monitor to make sure it matched his, and it did. His comments:

' It's not that high' 'your Ana is fine' (it is 1:85) & 'Does gluten - free really help?' ' Of course, you're

fatigued, , you have an auto immune disease.' - He was very sarcastic - oh & did I mention that I am

A stroke survivor with a coiled stent end brain aneurysm? And I

have been dx'd conclusively with Primary sjo

The next day, the BP spiked to 180/95. I called during his during office hours to see if I should double

The med or any other suggestions.  He never called back. BP crept higher that evening & I felt

lousier than usual. Trying to avoid ER- called his exchange.  He called back, sounding very irritated

and  said ' do not double med &'stop taking your BP'!

Next morning appt with my neuro ( also 2 hrs away in L.A) He was very concerned about BP and was

Shocked by PR dr  advice. His advice was totally opposite.

I am now in a major flare - started a pred pack - will see rheumo soon.

Yes, I have dumped the PD - hard to find a decent one in my area.

Thanks for listening - I would be lost without this forum. I hope you all will have a good weekend.

[finallyadx]

Oh my gosh - so very sorry you had such a jerk for a PCP.  I do hope you have better luck finding a good PCP now.

Sometimes we have to fire a dr to find a "prince".  I had to fire two before I found a great dr.

Scary stuff - high BP - I have no advice unfortunately, I do not have high blood pressure - I have very low blood pressure.  Sounds like your neuro is more helpful than your PCP.

Hope you can find some relief and lower the blood pressure soon.

Sending positive thoughts and prayers.

[cccourt1942]

Trish:  Gee...at a time we just don't need that final straw-------------Wham!
     L.A.   Goodness, in other parts of the world we perceive that you are in the mother lode of doctors, support personnel, alternative options, readily available healthy foods, and so forth and so on.  In the rest of the world, we think we are the only ones with jerk experiences.  We have learned today!! 

     With decreased energy and expanding costs for supplements, meds, it is tiring going from dr. to dr. to dr.  I only have one "ologist" to replace.  I have put it off for 3 months. (Actually about a year and a half...just three months since SjS dx.  I knew I wouldn't return to her before dx.)  Facing this kind of treatment adds fuel to your condition's effects on your body.  I am saying all this as my blood pressure can go up at a doctor's office when they put me on the auto BP cuff.  When it starts to "go up" a second time, I have to pull it off.  My blood pressure spikes due to the tight cuff.  I tell them to check my BP on the chart and there is no reason to go up to 205 when I have have 75/125 to 80/ 135 ordinarily.  They never listen.  By the time they pull out the "hand" cranking one my BP can be 90-95/150-160.  If they take it again at the end of the apt, it's back down.   They can be so unrealistic.

Sorry you have to suffer these irritations when you feel so bad.  Hope you can relax today and have a better evening!

[litliwlowa]

Woah, P.Trish

Sounds like a rerun of my last 4 months of 2012. First I even knew I was spiking bp and hr was in my neuro office. 277/117 pulse 116. (resting) I'll never forget it.

Had teh same runaround with my THEN PCP who was an internal medicine doc. She had sent me to "BP specialist" in 2011 and in his office my bp was normal. I even kept records of the high spikes, but he dismissed as unreliable since I was using the wrist cuff.

Took 2 trips to ER, 2 trips to urgent care and still all they did was up my clonidine - yet NO instruction on what to do if it spiked again. Then I changed PCP to my current one and he has been wonderful. Oh they did do a brain CT and keep me on heart monitor for 5 hours the second ER trip then sent me on my way.

You have reason to be concerned given your medical history. Every bit as much as I had reason to be concerned. My new PCP got me into vascular doc who then took over managing my bp issues. My concerns were more seizure related, as I have been seizure-free since 1991 and sure aim to keep it that way.

Prayers that you find a good PCP quickly, one that is a good "fit" for you.

By the way, I still don't know what was causing my spikes. Vascular suggested it was related to either or thyroid levels or TBI residuals (the latter a bit odd as I am 29 years today post injury)

Things that were checked were renal arteries, those were good. Also checked via plasma test for pleochromocytoma (benign tumor in adrenal medula) that test was a-okay. Endo did 24 hr urine collection as sometime those benign buggers can turn up on aother parts of adrenals, those tests were also fine.

I do notice when my pain level is elevated, even with all the BP meds I am on, I tend to have those paroxysmal spikes again.

Thankfully you have an astute neuro.

FYI, this is what I am on currently for blood pressure:

Clonidine: .3mg am, .2 mg afternoon, .2 mg bedtime - if systolic goes 180 or higher in between, take .1 mg
Avapro: 150 mg AM and 150 mg PM (not the combo with HTCZ - I am allergic to hydrochlorothiazides)

I think some of that paroxysmal BP has to be related to sjogrens in some manner. Up until Sjo's smacked me upside the head so to speak symptomatically, I was nearly completely titrated off clonidine (was only on that one to start with), now I remain on 7x's the dose I was on plus added a second med - been that way a year now.

Hugs

Amanda

[Carebear]

Dear P. Trish,

This sort of thing just makes my blood boil.  Vent away.  I hope you feel a bit better from having done so, and I really hope your blood pressure has leveled out.

Jerk and dangerous, for sure! 

[P.Trish]

Thank all of you so much for understanding - you people really are the only ones who truly 'get it".

Cccourt, I don't  live in L.A. - I live in Central Ca, which is 2 hours away. Most of the doctors in my area are sub standard

and that is why many of our citizens, who need specialists,  go to L.A.   Fortunately, my ologists are in L.A. (Cedars Sinai)

and it is worth the 2 hours, though I  must be driven by my ever helpful  DH, who is still working.  Still, I need a

Primary Care Dr. nearby.  Oh me! (as my grand mother used to say)

litliwlowa, thanks for the thyroid reminder & your other information. I have nodules on my thyroid, but the on the last

endocrinologist visit, she said she will check it in 6 months. TSH was normal at that time (4 months, ago).  I will ask my rheumy

for a TSH - next appt on Mar. 7.

Happy Thursday.

[P.Trish]

Amanda, thank you for sharing the names of your meds. I am a mess, emotionally, really a mss. Here

I am, gazing at the ocean ( also 2 hrs away, but worth the drive.)  Before bed, BP was 160/95 - I was

afraid to go to sleep. My husband is growing weary of all ths, even though he never complains & is

extremely helpful. Sorry for the rambling - I have lots for which to be grateful. Our 11 & 14 yr old

Grandsons are with us at the beach. We are in a nice hotel. I should be happy!

So, this is must be what depression feels like.

Yesterday, Fri evening 'out of the blue', my neuuro's assistant called for

contact  info about my local primary dr - I hope he is going to speak with him about his

bad advice. .And in my original post, I forgot to mention that my PC dr advised me

to take daily 150 mg of nuvigil (He knows this raises my BP, so I rarely take it), I have not taken one

in over 3 months, & than only 75 mg) I think he is trying to kill me

I apologize for jumping from one thing to the next.

[Carebear]

No need to apologize,  P.Trish.  No need at all.  That's what we are here for.

I just hope you feel some relief soon.

[Ripvanann]

P. Trish, I am so sorry. Girl, we kiss some frogs in this circus ring! Listen, I have a PCP on paper and that's it. They're useless to me. Some people are blessed to find a gem, but that's not been me and it's obviously not been you.

I do two things: firstly,  my rheumy IS a gem. He will treat me for and Rx anything and everything I need. Now he's older and doesn't care about protocol,  but he knows me and knows medicine.  He knows what I need.  Do you think you can talk to your  rheumy or this neuro about becoming someone like my rheumy? Explain your situation (which is quite visible now) and ask he or she if they can either get you in with a good PCP and if not, can they just treat you? This way it's on them to find you proper care.

Secondly,  I find that express medical facilities are wonderful for basic problems like infections and such. I use MedExpress when I'm in a pinch (like now when my rheumy os out of the country).

Finally, Provigil/Nuvigil made me depressed.  Very depressed.  If you're back on that, get off of it. You will also feel depressed when your BP is high because it causes pressure on certain nerves that can trigger depression. Try and meditate on every good thing you have going on around you right now. Camp out on the beach if you have to.

I'm praying for you.

Grace and peace,
~Andrea

[P.Trish]

Thanks Amanda & Everyone. I did not restart nuvigl. The high BP/ depression link makes sense -

Whenever mine is approaching 150, I cry over every little thing.

Just remembered: Breathe in 'I am' breathe out 'at peace'. I think that was from Joe.

[Carolina]

ah, you have a PCP who has quit, he's even handed in his resignation by being 'snarky'.......so firing him will be easy!

What do you have to do to change...I know it often isn't easy.

You may need to change your blood pressure medication, just for starters.

With your history you may need something different or more of what you're taking.

My husband recently found his BP spiking high, and saw his (NICE) PCP and has now increased one of his meds, and things are fine.

It IS harder when we have so many things going on, I know P.Trish.  variable symptoms with variable medications and variable conditions is a recipe for confusion and ALSO requires patience and a positive attitude from your PCP.

Keep at it.  You'll get what you need.  We all hate to change doctors....even the nasty ones become familiar.  But familiarity here hasn't served you well.

Hugs,  Elaine

[P.Trish]

Elaine, I am finally making a chronological list of the PC dr's actions; the total of which have occurred

over the past year, Which shows my stupidly in putting up with it. No more - and he is getting a letter

explaining why I am firing him. What makes this even more interesting is that he is highly regarded in

our community, because of our  local state university; he was  their 'sports' dr for many years.

He was inducted into their hall of fame & he is a legend in his own mind.

He was recommended by my best friend's husband( a physician's assistant).

Now, I really do feel better - ready to move forward